I am Michael Leist

My first symptom was slurred speech, but only when I drank alcohol, which was not normal for me. Then, I noticed certain words or sounds that I couldn’t pronounce correctly, but it was only after lunch.

Then in December of 2015, I looked in the mirror and stuck out my tongue. My tongue looked like it had small worms moving underneath the surface, and that’s when I thought this is something I need to see a doctor about.

For my first 3 years since my first symptom in February 2015 (and 2 years after diagnosis in Feb 2016), I was working out pretty normally, and practicing 3 times/week on my dragon boat team. Even at a national level, as our team took 5th place at the U. S. Nationals in Sept 2017. But about 2 years after diagnosis I started experiencing head drop, and I decided it was probably time to quit paddling.

So I continued to work out with weights, and I did cardio, and walked. I did all of that until about mid way through 2019 when my balance started getting bad, and I started falling, a lot. My doctors suggested I move to a wheelchair, which I did permanently in August 2019.

Since then, I have gone down quickly in functional ability / muscle strength. Currently I am 99% paralyzed, have a tracheostomy, and breathe through a ventilator since March 2020. I just turned 52 years old. I haven’t spoken with my own voice since mid-2017.